How has sarcoidosis impacted my family?

Day 679.

It is coming up to my two-year anniversary of my first Ventricular Tachycardia (VT) event. This year as the anniversary creeps up on me, I am feeling reflective. I am thinking a lot about how my family has been impacted.

My son

I worry a lot about my son. He was so young when it all first happened - only three years old. I wonder how this will impact him long term and how it will shape him?

One of the things that has stuck with me is how he tried to help me when I had that first VT event. I literally couldn't move, and my husband was in the bath. While I was lying next to my bed he tried to bring me things to try and help me. This is so emotional to me, as I couldn't even talk to him to let him know that I didn't need what he was bringing me or to try and reassure him. I didn't have the energy to talk at all, literally dripping in sweat from the exertion of how fast my heart was going. I was also in real pain when I tried to move at all. His worried little face will stay with me forever.

Every time that I came home after being in hospital for a few days, I would rush to him when I came home. He would be so detached. I feel like he was losing his dependence on me, thinking that I could disappear at any moment.

I also clearly remember his face when the paramedics came to fetch me for the third time. He looked so worried and I knew that he knew that I would be going to hospital again. He knew what seeing the paramedics meant. I tried to lighten up the moment by pointing out to him the green pants of the paramedics. I am not sure how helpful that was.

After I got my implantable cardioverter defibrillator (ICD), I had to teach him not to jump on me due to the wound. This was really hard for him. He got so upset when he forgot and thought that he was hurting me. This evolved into him getting upset in situations where kids were crying because of something he did. He is still extremely aware of other's feelings, and tries to avoid hurting someone at all costs.

My husband

My husband is really reserved. He does not like sharing his feelings. He does not like to discuss things in great detail to try and work through it. He is very much an introvert.

As the only person who was with me through it all, I initially shared all of my thoughts and concerns with him. He was the only one who could truly understand it all. However, that was really selfish of me. He found it really overwhelming. I had to find a therapist to talk to about some things to try and let him have a break from dealing with my fears on top of his own thoughts and emotions.

I still don't know how he has managed to deal with some things. While we were waiting for the ambulance that first night, he came over to me in between taking care of our son and trying to keep a lookout for the ambulance to tell me to keep talking to him. What must he have been thinking to say that?

I also really don't know how he dealt with seeing his wife being shocked back to normality with an external defibrillator. At one point the paramedics were asking him things about how I should be treated as I was struggling to talk to them.

I don't know if that first night was the worst for him, or about a month later when my ICD fired three times within an hour. I had the first shock while walking down the stairs. He heard an almighty crash and found me at the bottom of the stairs with my leg twisted into the handrail. He said it had sounded like I had been knocked out when I fell. I only woke up after he had managed to untangle me from the stairs. What was he thinking when that happened?

He really needed to take a break from things and wanted us to have some family holidays to have some fun. I found this incredibly difficult as for a long time I was concerned about being away from a hospital or from my care team. We planned a few trips that we ended up having to cancel due to ongoing medical events. This was really hard on him.

Throughout all of this, he looked after our son and kept him away when bad things were happening to me. He gave our son stability and care while I was in hospital. He pretty much envisioned solo-parenting a few times. This does not even include times he stepped up when I was fatigued or scared or just driving me and our son around when I was unable to drive.

We setup our wills and checked our life insurance. We both had to deal with our mortality in a big way. He is taking less risks than he would have otherwise, as we can't risk the possibility of our son losing both parents.

It's a lot. I feel very lucky to have him in my life.